A WANTAGE-based charity has helped the family of Julie Todd – who died of sudden unexpected death in epilepsy (SUDEP)– raise awareness of epilepsy risks.

Julie died in 2019 from SUDEP, which is when someone with epilepsy dies and no other cause of death can be found. It is a significant cause of death for people with epilepsy.

The 55-year-old from Westcliff-on-Sea in Essex was not diagnosed with epilepsy until after she had left school.

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Following her death, her family had raised concerns after the coroner as initially didn’t think Julie’s death could be SUDEP or epilepsy-related and assumed Julie was not having any seizures.

Now, with the support of the Wantage-based charity SUDEP Action, the family has had Julie’s cause of death changed and has found out more about death in epilepsy.

Her sister, Tricia Todd, said: “Julie loved life and was completely family orientated. Her sudden death at home completely shocked all of us and raised a lot of questions.

“We know that she had just one hospital appointment, which was to diagnose epilepsy, and then she was prescribed two types of medication which she was on for many years.

“At some point, the second drug was no longer prescribed and we’re not sure why.

“There were also concerns about the effect of being on these old-style anti-epilepsy drugs for so long – she was starting to suffer side effects, yet she wasn’t transferred to the newer medication.

“If we had been asked at this stage, we could have given detailed information about the pattern of her seizures.”

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An inquest was held and the pathologist – convinced that Julie’s death was SUDEP – updated her death certificate accordingly.

The GP practice responsible for Julie’s care also held a Significant Event Analysis and now carries out yearly reviews for epilepsy patients.

Ms Todd added: “We feel that, as her family, we did the right thing by getting involved and challenging the way the investigation was going so that justice was done for her.

“If we hadn’t, the cause of her death might never have been established. The inquest also meant we had an opportunity to raise questions about Julie’s epilepsy care.

“We didn’t want to make anyone a scapegoat, but we felt strongly that things needed to change in the epilepsy care being given.”

Jane Hanna OBE, CEO of SUDEP Action, said: “Some health professionals worry that discussing SUDEP and epilepsy risks could frighten their patients.

“However, negative outcomes can be prevented for many people with epilepsy.

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“Openly discussing risks can enable people to make more informed choices about treatment and lifestyle and, most importantly, allow them to take steps to reduce these risks.”


Read more from this author

This story was written by Gee Harland. She joined the team in 2022 as a senior multimedia reporter.

Gee covers Wallingford, Wantage and Didcot.

Get in touch with her by emailing: Gee.harland@newsquest.co.uk

Follow her on Twitter @Geeharland

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